MAKING A DIFFERENCE
A smart phone app that’s enabling women in rural Rwanda to battle breast cancer.
Mulungi Shwema caught her breath as her fingers brushed against a lump. She was at home in Gisozi, in the Gasabo district of Rwanda, and performing a selfexamination just as she had seen on a smartphone app a health worker had shown her earlier at the community health centre.
She felt her breast again but there was no mistaking it – the lump was slightly bigger than a pea. Taking a deep breath, Mulungi, 38, sat down, trying not to panic. She remembered the information fromthe app – go back to the health centre if she found a lump. Amother of two, Mulungi hurried the kilometre to the clinic and blurted out her news. ‘We may need to do a biopsy,’ the doctor said after examining her.
The biopsy revealed the lump was cancerous and that she needed a mastectomy and chemotherapy. ‘But you detected it early,’ the doctor said, ‘before it spread.’
That was last month. Mulungi is just one of around 10,000 women whose lives have been saved thanks to a simple phone app by the Breast Cancer Initiative East Africa ( BCIEA). ‘I was lucky to have found it early,’ she says. ‘I didn’t know about selfexamination and so had never done it before. The information I’d read and pictures I’d seen on the smartphone were what made me check.’
The woman responsible for getting the smartphone and the app to the village in Rwanda – Philippa Kibugu-Decuir – is happy one more life has been saved in time.
‘The phone may look small,’ Philippa says. ‘But this is really what is helping save the lives of hundreds of women in the remote villages of East Africa.’
The smartphone, which costs around 126,316 Rwanda franc (Dh623) and comes preloaded with the app that Philippa built with several app developers in the US, has now become a potent tool in her campaign to raise awareness about breast cancer in Rwanda, where lack of knowledge, myths
about the disease and poor facilities had until recently prevented women from going for check-ups and treatment.
Ina country where mobile phone usage is relatively widespread, Philippa hopes the app will spread information about symptoms, how to do manual tests to detect lumps, and plenty of other details in order tomake it easy for women to understand and take action that could potentially save their lives.
In just two months since the initiative was launched, it has educated thousands of people in Rwanda. Women have done self-examinations and approached health centres and doctors after finding lumps.
The few who found that their lumps were cancerous have been quickly referred to larger hospitals in the city where they have been treated or are undergoing treatment.
Philippa, a Rwandan-American teacher living in Texas in the US, knows the disease only too well. She lost her 48-year-old sister Mabel, who lived in Gisozi, to breast cancer and then had to battle it herself.
‘Mabel found out that she had breast cancer after she discovered a lump,’ says Philippa. ‘But there were no hospitals in the village that could treat it properly.’
Back then, in the 1980s, mammograms weren’t available and there were no qualified oncologists in the country. Every time cancer patients needed radiotherapy or chemo, they were referred to hospitals in neighbouring countries such as Uganda.
By the time Philippa made arrangements to fly her sister to London for treatment in 1986, it was too late. ‘The gruelling 21-hour, 6,500km journey worsened her health as the cancer had spread. She had developed secondary terminal liver cancer by then. My sister finally lost her life in a hospital in London after fighting for amonth,’ says Philippa. ‘She had struggled with the disease for more than five years, but if she had detected the lump earlier and had had access to treatment, she could have been saved.
‘I was devastated and determined that her death should not be in vain. So I set about researching breast cancer – its symptoms, screening, treatment and how to distinguish fact from fiction.
‘I wanted to do something to raise awareness among other women – my sisters in the villages of East Africa – who might be able to detect breast cancer in time and save their lives. I was convinced greater knowledge of the condition would lead to faster treatment and improved survival rates.’
As she trawled online, Philippa realised she had to start from the grass roots – the rural communities of Africa. Breast cancer is themost common cancer among women in Rwanda followed by cervical and stomach cancer, according to statistics from the Ministry of Health. But sadly, several myths prevailed – that it was nature’s punishment for a wrongdoing and nothing could be done about it; that screening causes infertility, it’s a disease of the West, contagious and so on.
Some married women diagnosed with breast cancer were stigmatised in their villages because of the misconception that cancer is contagious. They also faced the humiliation of locals calling on their husbands to remarry. So, in many cases, women avoided being diagnosed by visiting doctors in case they were shunned.
‘For eight years I worked relentlessly after work, compiling everything I could about cancer,’ says Philippa. ‘I spoke to experts and formulated plans on how to raise awareness about the disease in my home country.’
She wanted to print brochures and pamphlets about breast cancer and distribute themin the villages. Then one day, while in the shower, she found a walnut-size lump in her left breast. ‘Having studied somuch about the condition, I knew I shouldn’t ignore it and quickly made an appointment with a doctor,’ she says. A biopsy revealed that she had invasive ductal stage 1 breast cancer. Philippa underwent a double mastectomy with reconstruction, followed by chemotherapy.
‘I had a team of excellent doctors, nurses and a support system including my loving family, and five years later was declared cancer-free,’ she says.
‘That’s when I realised how privileged I was. I had access to good health care and so could take immediate action. But women in some areas in the world – like the villages of Rwanda– were not so lucky. The lack of proper health care could cost them their lives.
With one out of 12 women worldwide being diagnosed with breast cancer at some point in their lifetime, Philippa believes that every patient deserves the same treatment options that she had.
‘Where one’s home is located should not determine if she lives or dies,’ she says.
Itwas with this mindset plus the ‘unexplainable energy that only a survivor can understand and the will to honour my sister’ that compelled Philippa to found BCIEA in 2008. Its aimis to spread awareness about the need to do regular manual check-ups and consult a doctor if a woman notices lumps or other signs of breast cancer. The charity has gone on to print and distribute pamphlets to more than 20,000 people across several villages.
‘It was while I was in Rwanda earlier this year that I realised how widespread the use of mobile phones is and one day, had a light-bulb moment,’ says Philippa. ‘Why not use mobile phones to spread information about breast cancer?’
In this East African country, where 72 per cent of the population has a mobile phone, it is estimated that 67 per cent of owners lack any kind of information about breast cancer screening or self-examination. Avast majority of the phones are basic, as expensive smartphones are unaffordable. Additionally, internet penetration in Rwanda is just 25 per cent and 98 per cent of the mobile devices do not support fast-speed internet, which means they are unable to download video or pictures quickly.
‘I felt that if we made phones available for women with an app about breast cancer, it would make it easy for them
Breast cancer is the most COMMON cancer among Rwandan women, but too many MYTHS prevail ed–screening causes INFERTILITY, or that it’ s nature’s PUNISHMENT, CONTAGIOUS and a Western disease
to understand and take action,’ says Philippa.
Funds were raised through sponsorships and donations in the US to contribute to the initiative– One Smartphone per Village in Rwanda. And with 14,847 villages in the country, the charity has an ambitious target of reaching hundreds of thousands of women. The smartphone with the app is delivered to villagers by aid workers, badged with the logo: Knowledge is Power. Early Detection is the Best Protection. It provides users with information about the charity and its work, along with information about breast cancer symptoms, myths, truths and self-examination.
The app also features inspirational stories from survivors and a feedback form where users can ask experts questions.
In August a woman named Valerie received the first smartphone loadedwith the app in Gisozi. She was eager to share it during her village family night and Umuganda gathering.
Valerie speaks both English and Kinyarwanda, the national language, andwill be able to effectively use the app as a teaching and reference tool. It will soon be available in Kinyarwanda and Swahili to reach other communities.
‘Tomake the phone initiative evenmore powerful, we decided to link up with social change groups in Rwanda who have access to remote villages,’ says Philippa. Aspire, a women’s organisation based in Gisozi, was the first to receive and be trained on how to use the app and will help distribute the phones to isolated areas. ‘This will help us a lot because many women are ignorant about breast cancer,’ says Valence Mukashema, a social worker at Aspire.
Philippa also began enlisting progressive villagers to speak out about the false beliefs related to cancer. ‘It was important to get rid of the stigma from the minds of the people and tell them that it was a disease, which, if detected early, could be cured,’ she says.
‘We also put up several billboards in and around the villages stressing the importance of self-checks and seek help. I wanted to drive home the point that survival is highest when breast cancer is found early.’
Over the years since Philippa has started taking her message to villages, the results of her work are beginning to show. There is an increase in the number of women who are visiting doctors to get themselves checked up. ‘There is a change in the attitude of people as well,’ she says. Random surveys done among villagers show that there is a heightened awareness about the disease and that, if detected early, it could be cured. The stigma associated with the disease too has started to disappear.
In the village of Rutunga in Gasabo, 62women and fourmen turned up to hear about the illness and ask questions when the smartphone was handed over to their social worker, Nyinawayezu in September. ‘These are hard working and proud farmers who were ready to leave their fields to come and hear about breast cancer,’ says Philippa. ‘Two people were brave enough to say they have lumps in their breasts and we plan to followup with them.’
Among various other projects, BCIEA funds visits by trained nurses to remote villages to perform clinical breast examinations on women and some men aged 35 and above. Suspicious results are referred for further testing. So popular is this particular programme that queues form throughout villages to access the service when it is there.
In September alone, out of 294 women screened, four had suspicious growth and are being followed up on. ‘It is a small movement, but in time it will grow and hopefully cover the continent, informing women and helping save lives,’ says Philippa.
It was vital to get rid of the STIGMA and tell people that breast cancer was a DISEASE, which if detected early could be CURED. Survival rates are very high when breast cancer is found EARLY
Philippa Kibugu-Decuir is determined to ensure that women in the remotest corners of Africa have easy access to breast cancer treatment
The smartphone app has already started delivering results, with many women learning how to do self-examination